What a day

Well - Naya is recovering from the shunt and it seems to be working fine. But all of this stress and the procedures have now caused digestion issues and discomfort. And there is more to come tomorrow. She got to sleep today with the help of meds, and we think it was really good for her to finally rest.

Because of her digestion, she is not allowed to eat - yet again! But hopefully her system will be better tomorrow.

Our job right now is to be her full time advocate and challenge everyone to keep it simple and work to get her strong and allow her to recover. We saved her from an extra procedure and another prick in her arm. GO PARENTS!

She woke up this afternoon in good spirits and no pain. Whew. She even gave Zak a hard time. That personality is there and strong.

A truly touching moment happened when she cried about how much we were helping her and loved her. We of course know it is not only our responsibility but our only desire, but I guess a 9-year old doesn't always realize that about their parents.

One More Day at a Time

We are going to stay at least one more night. We just where not ready to dive into this procedure today since we weren't quite up to speed from the surgery from yesterday. The good news in this is that we where able to combine two into one so if all works out well tomorrow we should be off and away from the hospital to feel "normal" for a couple of days. Which would be amazing. Think, strong, no quit in you, thoughts for us tomorrow.

Oh What a Team

Naya is going in for a bone marrow test and in good spirits thanks to Hank. Here they are listening to Oh What a Night by Frankie Valli. Hank is going to turn her into a junkie of music from 40 Years ago.

Oh What a Night

Late December back in '63. Oh wait, that's not it but certainly Frankie Valli wasn't thinking about me and Naya hanging in 3E43 at CHOP when he penned that classic of my childhood. We where up and about for a 3:30 am stroll of the 3rd floor and our favorite bridge overlooking the ER and the UoP campus. Hung there for a little then back to bed. Our nurse was great in helping us figure out how to get that colon going after all that anesthesia. Man that stuff will play havoc on you GI tract.

We just completed another loop, here is the view on the bridge. Btw, Naya is not happy I'm showing you all her unbrushed hair.

Today we will have one last test performed and then we are out of here and heading home.

Lucky

Today as Naya struggled to do the basics of sitting and walking, she and I talked about how brave she is. I don't know what I said to prompt her point but she told me that we are a very lucky family and she was so fortunate and lucky. Imagine the character she has to be able to say that given her condition. Even in this horrible time, we are lucky to have so much love and support surrounding her-and blessed with two amazing children.

Movin On Up - PICU to NeurOnc

Alrighty then! We are headed out of the Pediatric Intensive Care room downstairs into our lavish, private suite for a night. Then we are blowing out of here tomorrow.

Inspired

Naya has been through more than any child should have to go through, and she is facing a long road ahead. I am so inspired by her spirit, bravery and strength. She is trusting us and her doctors to get her well-and doing her part to make that happen. She is amazing.

Groundhog Day - Sort Of...

We are hanging out in the PICU recovering from the soreness of having a plastic straw, sort of, snaked from our brain to our abdomen. The painful part of this for the next couple of days is the abdominal incision used to pull the straw from the neck down to the abdomen. Those core muscles are used for just about every movement and when they are sore, oh boy that is unpleasant. We are going to stay in the hospital tonight since the soreness/pain is a little more than we expected plus we have a bone marrow harvest procedure tomorrow at 8:30 am.

I will say that the Naya of old is emerging and popping through the pain so I'm pretty confident the shunt is doing its job. She seams much less dizzy, less nauseous, and generally less discomfort although that is masked somewhat by the abdominal and neck pain.

So here is to another night at CHOP and the wonderful Bobby Burger Palace burgers. Check it out, Bobby Flay's burger joint.

PS. Naya loves the chocolate shakes.

A New Day

Naya awoke from surgery just fine! The surgery went well, lasted about 30 minutes and achieved its mission. Last night she was feeling a fair amount of post op pain but once we administered the pain meds she was sleeping comfortably. The expectation is that she can eat and drink what she wants, that she will be up and about this morning, obtain physical therapy sign off, and be homeward bound in the afternoon. That is the plan.

We will take it one step and goal at a time.

A Long Day - Even A Longer Night

After a very long day Naya came out of the MRI with a bad headache.  I checked her incision and it was pretty clear to me that cerebral spinal fluid (CSF) was pulling around her incision so I asked for the neurosurgeon to come check her out before we went home.  Sure enough, he agreed and asked if she had eaten anything after the MRI.  She didn't so he went immediately to schedule an operating room so he could install a shunt in her tonight. The surgery just started at 8:14.  It should make her much more comfortable.  The best day she has had since the initial surgery was when we brought her back into the hospital because she was leaking a little CSF.  My hypothesis is that while the CSF was leaking it relieved all the pressure from her brain and made her feel like the Naya of old.  Lets hope the shunt does the same thing and makes her much more comfortable.

Certainly not the outcome from the day that we wanted but we will take it one day at a time.

AIS with Naya?

Naya is getting her fitting and an MRI today. While she was waiting, they have her a cozy pillow case to keep her comfortable. Naya thought they were the same ones that AIS created for MLK day. The nurse thinks they are. How ironic that one ended up with Naya today! Hopefully a good sign that the day will be good.

A Big Day Ahead

Good morning. We start procedures today at 10:30 with radiation simulation.  We have to make a mask of her face that will look similar to a hockey goalie's mask.  The mask will be used over the next six weeks for her treatments to keep her completely still and ensure the accuracy of the treatment.  It's a long haul, 1.5 hours on her belly.

The next procedure is a spinal MRI which is 2+ hours on her back.  Can you say boring?  Neither of these procedures are painful, they are, however, long and tedious.

One other procedure is on tap for today also and it will be painful but she will be sedated.  Hopefully when she comes out she is not feeling sore or uncomfortable. So a big day to say the least.  It may sound like too much but we are working to accomplish all the preparation activities we need to get into the treatment phase as soon as possible so we can cure this thing.

Oh yea, one other bummer, no food until all this is over because of the sedation.  I better have chocolate chip cookies, pasta, and fruit all at the ready.

All Day!

Today was a great day! Naya was home all day, we didn't see any leaking, and I couldn't, neither could the neuro-oncologist, feel any pooling of CSF. Tomorrow is a huge day. We simulate the radiation treatments where they make a mold of Naya's head which will take about two hours. Then we are off to a spinal MRI, 2.25 hours, and bone marrow biopsy and fluid harvesting. Can you say ouch?

Wish us well.

Good Morning

Good morning indeed! We have NO CSF leaking and there also does not appear to be abnormal pooling or collecting of CSF under the skin implying it is draining as it should through the drain the surgeons installed 12 days ago. We will keep a close eye on her today so please keep all the positive vibes coming our way.

Night Watch

Naya just had 6 vertical mattress sutures added to her incision to attempt to stop the csf leak. Now I need everyone to send positive, no leaking vibes her way. Tomorrow am is the milestone. No leaking overnight!

Eating a starburst in the ER. We come prepared

A few laughs followed by a bump in the road and

The day started off good. No headache. No throwing up. Naya had a couple of pancakes with M&M's Of course and then she and i watched the finale of Downton Abbey together. It was the first time we could actually enjoy something and relax in a long time. She got a shower and we finally got her new bedroom in order. The fluid at the incision though kept showing up. So, we called the doctor and he wanted Naya back at CHOP. We are hoping new stitches do the trick but we aren't totally sure. If not, she will get another minor procedure tomorrow.

She is resting now and we are just waiting.

Arg - Going Back to CHOP

Naya is having a great day. She woke up strong with almost no headache, we use a scale of 1-10 and it was a 1, took a shower, washed her hair, but alas her incision is still leaking ever so slightly so we must go back to CHOP. Just plain sucks because she doesn't have any nausea and her pain is very mild. She is definitely on the mend. They will see if adding another stitch or two will do the trick or if we have to have a shunt installed tomorrow. Let's all hope for a stitch.

MAC and Cheese - Yum

The simple things in life. Dinner with the family, home made mac and cheese, and a great piece of steak. It doesn't get better than this!

Home Again

We where discharged late this afternoon and about to sit down to a family dinner of prime NY strip steak and home made, Amy's famous, mac and cheese at home! Thank you all for the prayers, well wishes, gifts, positive energy and encouragement.

Until tomorrow....